Disappointment…Anger….Determination

Today I was finally able to take time off of work to make my long awaited appointment with my doctor.  I was totally stoked.  My family doc has always been open minded and intelligent when it has come to various treatments in the past.  He has often spouted about naturopathy being a good alternative in certain cases.  I’ve often felt in all cases but I recognize it can be hard to pull away from the pharmaceutical gods when your livelihood relies on it.

Now I’m a fairly intelligent woman.  I’ve not just taken one source and run with it as true gospel.  I’ve actually gone to various sources, listened to various experts opinions from all over the world.  I’ve noted where they believe the shortcomings are in regards to testing and the tests they recommend to fill those glaring holes.  I’ve read. I’ve listened.  I’ve understood.  What they’ve said has made sense.

Especially as I am still living with the same symptoms as I had some twenty years ago when I was first diagnosed.

Clue #1 that something ain’t right folks.

Clue #2 would be that I now have NEW symptoms that are or rather, can be, all directly related to being hypothyroid.  By that, I mean I know I’ll always have thyroid disease, but by rights, if I was being treated properly, I should no longer be hypothyroid.  By no longer being hypothyroid, all my symptoms should be gone.  They are not.

I had my list of 10 tests all written down.  I was actually quite excited about finally taking that step forward to getting things fixed once and for all.  I was early, going through the information I knew, preempting some questions he might have as to why I wanted to change over to NDT.  I like being prepared, especially when dealing with someone who I assume is somewhat knowledgeable in the topic.

Finally my name was called and off I went to the exam room.  I have my list in hand (list? aghast!) and armed with the knowledge I’ve gained and convinced my doctor will speak with me in an intelligent manner as he has always done in the past.

Alas, it seems not to be.  Not only did I hear about how NDT is unreliable, but not as affective as synthetic thyroid hormone.  I informed him that because of my 20+ years on levothyroxine sodium, I had developed “Air Hunger” and have never stopped being hypothyroid.  I didn’t realize by rights I shouldn’t be hypothyroid anymore.  He actually laughed and said that I’ll always be hypothyroid.  I said if I stayed on levothyroxine, he’s quite right about that.  But here’s the crux of that comment.  I will always have thyroid disease.  With proper therapy, I should no longer be hypothyroid.  To be hypothyroid means that I still have symptoms (even a small handful).  To have no symptoms (hyper nor hypo) means I have thyroid disease…WITH NO SYMPTOMS!!  The key words.

I’ll be honest, he did look a little startled at my definition of the difference.  He surprisingly agreed with me and then started asking about what the individual tests were for.  He said he’d never heard of anyone testing Free T3 or T4’s before.  He had no idea why I was wanting Ferritin tested, nor a 24 hour saliva cortisol test.

So I gave him a little bit of medical information strictly in regards to the thyroid.

TSH as we all know tests the Thyroid Stimulating Hormone that the PITUITARY gland secretes when it detects that the thyroid is either not producing enough, or too much.  What the TSH does NOT test is the actual thyroid hormones at all.

Ferritin is for the hair.  Or because of hair loss rather.  And for those of us who are tired of cleaning out the gobs of hair from the shower drain, you’ll know how desperately I want that tested.  And of course the 24 hour saliva cortisol test to help ensure the start of NDT is off to a good start.

He has been kind enough to schedule the testing my little flight of fancy has produced and we’ll see if it is worth it when the results come back.  Condescending little bastard at times.

Although,  he did say at the end of the appointment that he thinks going to see an Endocrinologist may be a good idea, instead of me doing all of this by myself.  Could have knocked me over considering he’s always told me it’s not needed.  Guess he’s maybe realized he doesn’t know all he needs to know about thyroid disease, huh?

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